Once upon a time, NEO Director of Training - Josh went to meet a then 3-year-old little girl named "Lily" and she's kept us smiling & giggling ever since.
Lily has kept her parents on their toes from the start, her first few months spent in the NICU at Rainbow Babies and Children’s Hospital, where they helped her breathe, eat and watched for seizures. After tackling occupational therapy to help her eat, and physical therapy to working on stretches and infant massage, Lily still had to have surgery to place a feeding tube in her stomach in order for her to go home. The little warrior continues to go to Cleveland Clinic twice a week for occupational, physical, and speech therapy.
Not long after going home, Lily had blood work drawn which helped to diagnose her with a very rare genetic disorder called Coffin Siris Syndrome. There are only 200 cases known worldwide. It causes developmental delays and intellectual disabilities along with low muscle tone, mobility issues, eating problems and an inability to gain weight at the expected rate. The doctors always tell mom, Emily, and dad, Frank, that Lily is not on the growth charts. Which, in return, they say that "Lily is on her own personal growth curve!"
Lily did not start talking until after two-years-old. Emily, paraphrases "If you think of Coffin Siris Syndrome as a book with chapters … she is missing chapters." The syndrome also affected her vision to the point where she is legally blind. While she does have glasses, it is taking her awhile to get used to them because the prescription is so strong.
About two months before we met Lily in 2019, she had been diagnosed with Autism Spectrum Disorder. She is nonverbal and has sensory sensitivities. Despite a rough road up to this point, she loves to laugh and smile. So why a service dog?
"A companion that would be able to help her with her anxiety and frustration from not being able to communicate what I need and want. Josh also assured us that we can use tasks to also help ease her sensory sensitivity."
Now with Shane by her side - life is an all new adventure, starting with speech therapy. Using her tablet for the majority of her communication, Shane is hot on Lily's tail putting to good use his commands to help her speech in therapy sessions. Emily explained, "She had just learned how to bring toys and snack to us to let us know I want this and I need help! Now - we can use the book provided by W.A.G.S. 4 Kids in a purposeful way so that Lily can one day help command her own dog!"
"I am not going to lie. The transition period with Shane has not be easy. Not because of Shane but because of some of Lily's behaviors. I never expected her to try and bite his face. It has taken a few months but now she has her moments with him where she will sit and pet him and let him give her kisses. These moments are precious. Shane has been such a trooper these past few months. I know they truly are best buds!"
And now as this fairytale book closes for Lily girl, another one opens. With her family and team of doctors behind her, and one furry best friend named "Shane".
"The trainers are all amazing. Everyone is willing to help including families of past W.A.G.S. dogs! I know Covid changed how things were happening but I definitely recommend doing training sessions with demo dogs to help get both our kiddos used to petting the dogs and to know exactly how to do the commands. Wendy helped find us a foundation that helped paid for Lily's dog due to her vision issues. The Trinity Rose Foundation helped us reach our goal. Everyone is willing to help no matter what day or time it is. They are truly an amazing team!" - Emily, Mom
Thank you world for taking the time to get to know me. Thank you for any support you can provide. Love, Lily girl!
Check in next Thursday for the third part of our 2021 “A Thankful Thanksgiving” blog series.
If you’d like to change the life of another child in Lily's name, please click the button below to make your online donation today. Together we can keep “Growing Possibilities, One Child at a Time.”